When I started 15 years ago, they waited until patients were declared brain dead before they asked the family about possible organ donation. Now the doctor in charge asks the question when they know treatment is no longer possible.

The person may have come into the emergency room with extensive brain damage after trauma caused by accident and the CT scan has already revealed no treatment is possible. Then the family [partner and/or blood relatives] is asked.

Hanneke Hagenaars

The doctor is obliged by law to check with the donor registry. The patient could be registered as giving or denying permission, or as having left the decision to their relatives. When the patient has agreed to be a donor, then the relatives don’t have any say in theory. In practice, they could say No. Then it’s very difficult for the doctor to get a Yes. The doctor can only inform the family of the patient’s wishes. If the family is against it, the doctors won’t start the procedure.

After the doctor has asked the question, we come in and give support. We give more information to the relatives, liaise with the doctor and nurses and start screening procedures, looking at which organs would be suitable and check for contraindications like cancer – one reason why you can’t donate organs.

People always think it would be very difficult to talk to the family but mostly it’s not. Dutch people are not that emotional – they are but they don’t show it – and they stay calm most of the time. And the doctor did the hard bit, they had to tell the family that the patient will die.

Sometimes I talk to the family and they are undecided because the person didn’t register their wishes. Then I take my time. I ask them what kind of person he or she was and to tell me about them. That often helps them decide whether they would have wanted to donate their organs.

Last Monday, I had a donor procedure and the patient, he was 51, had registered as a donor. But his wife and 13-year-old daughter had decided that they wouldn’t give permission for his heart and lungs. Then it’s my job to find out why not. Can I change their opinion? I have to be very careful when I talk to them, because I don’t want to push them but I want to let them know that he didn’t set any limits. I asked them why they didn’t want these organs to be donated. They told me, these organs belong to him and not to someone else, and were firm about that, so it was not possible. You have to stop then and not push.

You have to learn how far you can go. If you go one step too far, it’s finished, you’ve lost all credibility. I was an intensive care nurse before and most of us are. So, you have learned how to talk to families in a difficult situation.

Waiting lists

1,286 – total number of patients on waiting lists for organs in the Netherlands, 2012
829 – patients waiting for a kidney
562 – kidney patients waiting between 1 and 5 years
90 – kidney patients waiting longer than 5 years

Transplants

1,225 – total number of organ transplants carried out in the Netherlands, 2012
961 – total number of kidney transplants

You tell them that you just want to fulfil the patient’s wish to donate, that you will do everything in the most careful way, then you can see the relief on their faces.

Recently a young man died with a brain haemorrhage and they were so very much in grief. But when I told them it [the removal of organs for transplant] had all gone very well, they said that it gave them some comfort, that he didn’t die for nothing. We hear that a lot. We speak with the families after six weeks and then we give them a letter with the results of the transplantation. They are very glad to get that. We also get letters of thanks from recipients – we anonymize them and send them to the donor’s family, if they want to receive them. And it helps them a lot. You get goosebumps when you read them.

If you have one good donor, they can donate their heart, lungs – you can help two people with lungs – the liver, which can be split, the larger part for an adult and the smaller part for a child. You can do the bowel – it doesn’t happen a lot – the pancreas, two kidneys. That’s seven organs, but the mean is around four. And then there are tissues – corneas, skin, bones and the valves of the heart. If the whole heart cannot be used, the valves still can.

Donation is possible after either brain death or cardiac death. However, many people, despite extensive damage, don’t arrive at the last phase of brain death, they still have a respiratory drive, but not enough to stay alive. Then, with treatment no longer possible and with the family’s permission, we prepare the procedure. The operating room is ready, the surgeons are waiting. Then the doctor on the ICU [intensive care unit] stops the treatment, withdrawal of respiration. We then wait until the patient dies. Here in the Netherlands brain death is decreasing because our traffic is very safe and the treatment of neurological bleeding is advanced. An organ of a brain-dead donor is of better quality than an organ of a cardiac donor because the cooling of organs for donation can begin quickly and circulation has been ongoing until the last minute.

The difficulty in our country is that we have a shortage of organs and the organs we have are of poor quality. The donors are getting older because we live longer, and when they die, after having smoked, or drunk a lot or used drugs…

We have about 250 deceased organ donors a year in the Netherlands. About 600-700 deceased persons a year could be potential organ donors but in 70 per cent of the cases the family refuses because not many people have registered as donors.

I don’t meet the recipients – it’s better that way. Last week I was going to do an operation in another city nearby. I was outside waiting in the car. Then I saw, late at night, the patient arrive who would be getting the liver. Then again, I got goosebumps, because I knew, ‘I am going to work for him, I am going to get him the liver he needs.’

Hanneke Hagenaars spoke to Dinyar Godrej.
She is a transplant co-ordinator for deceased organ donors at the Erasmus MC, Rotterdam, a university hospital with the largest transplant programme in the Netherlands.

Our May edition is on the subject of trafficking of persons for their organs. It highlights the need to maximize legitimate organs donation.

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